Home > How my daughter with autism was different

How my daughter with autism was different

November 8th, 2021 at 06:51 pm

So my kiddo was different from an early age.  But there are lot of other things going on that meant there was always an excuse for everything.  Everything that seemed off or was different was explained away.  It sounds ridiculous but it really was.  I was the only mom of a girl in a special needs playgroup of boys with autism.  As I write this I feel like I can finally say to every mom who talked down to me there "hey now that I'm one of you, do you respect me??  Now that I have the same diagnosis as you, you can stop telling me we don't belong.  We are taking a spot from a kid who needs it?"  I really struggled a lot when she was younger because when you are the only mom of a girl in a group of boys, often times you are bit avoided and shunned, sometimes intentionally, sometimes unintentionally.  But a big part is that often times her interests were different and she was different.  She was as different from boys presenting with autism as she was from neutotypical girls.

I knew she was different when she could never join in with kids to play.  She would stand there and quietly watch from the sidelines, or playing by herself.  She would sometimes come to me and ask to leave and I would say can we try?  Can we try to fit in?  I always called her my square peg trying to fit into a round hole.  I didn't get it at all, except we both tried to fit in.

She had physical problems which is why she couldn't speak clearly and we needed speech therapy from age 1.  Same problems that plagued her younger sister.  We also did OT because she had poor fine motor and sensory issues with sounds and severe anxiety. This was often the diagnosis, you have a super sensitive child with severe anxiety.  Since my mom has OCD and severe anxiety I went along with it I mean when you meet my family it's pretty obvious.

She also never present with ADD or ADHD.  We would spend hours reading in the library and our daily routine was going to every library read/sing along. She knew every book, song, and word.  I mean the general day was reading for about 3-4 hours.  She memorized every fact of dinosaurs and animals.  She was obssessed with giraffes like other little girls loved princesses.  But I was never into princesses so I didn't think anything of it.  She wore only leopard or animal print clothes.  She got over certain types of fabric and clothes going over her head and zippers.  She ate everything I put in front of her.  So we muddled along with lots of social pragmatics playgrounds, speech, OT.  This continued for years.  The psychologist said the speech and OT might have taught her to self mimic and pretend so well she could cover and hide her problems for years.  Especially since she was gifted and it didn't have any real impact academically but clinicall significant was the difference bewteen most of her scores and her social score.  She is 2 standard deviations between academic and social.  She basically failed all social communications.

I accepted their diagnosis of anxiety because it made sense.  Yes she had no friends.  Yes she didn't ever have a BFF.  She couldn't seem to get over her shyness and make friends.  She never played with others in a public setting, but my mom was a terrible germaphobe and my DH wasn't exactly into it so I brushed it off.  She was the type of child who needed "playdates" with the same children to get comfortable.  Okay fine no biggie.  

Then she outgrew her fears of movie theaters, dark rooms, loud noises, etc.  We could watch tv again, she was afraid of stories that we "dark" with villans.  She enjoys watching shows like cirque du soliel, the circus, plays, music events, etc.  It took until about age 6 for this to pass. But I didn't care. We had a second child who wasn't ready, it was hard to do things anyway.  

Also when I had the second child I was in post-partum depression for a year and I struggled anyway.  And I was glad I had a super easy child that was potty trained and quiet.  She didn't like going to preschool which is how she ended up in the social pragmatics group.  But they told us that it was because i was a stay at home mom and made her clingy with her anxiety.  They said it was good for her and montessori where she would have been allowed to never talk and do her own thing I could see was the worse possible environment. So we went to a normal preschool where there was a routine and structure for 4 hours a day 2-3x a week.

But then elementary came and we seemed to be "fine".  We were outgrowing the fears, we could finally go to bed before midnight.  We seemed to be "normal".  Then covid happened. I could tell she wasn't talking during online schooling but there was nothing to be done. I couldn't be a ventriloquist.  It was an awful year at home.  But at the same time she finally made a couple of real friends.  She got it.  The constant proximity and space meant that she had a chance to develop something deeper socially. 

But now at 11 almost 12 and in 6th grade?  My daugher still doesn't speak at school to kids or teachers.  She is pretty much selectively mute.  She always looks sad and unhappy and depressed.  She is not part of the girl drama.  Emotionally the psychologist said she is 12-24 months behind which I can see.  She's outgrown OT and speech.  And now we just need help moving forward.

I'm trying to figure out what she wants.  I have people saying let her be.  I have others saying "work" on being normal. I'm not sure what she wants.  The let her be folks say maybe she doens't want human interaction or social connections.  That people with autism do not.  But then there are those who say they do.  I'm not sure what the answer is. 

I like to think that I think she does want a connection. She lights up at the thought of inviting her friends over for a sleepover or being invited.  She does smile with them and laugh.  That yes the support of being at home and being there and having other children over more seems better received.  

But trying to explain this to other moms is hard.  Explaining to others who say "she seems normal and fine" is hard.  Explaining why we aren't surprised is harder still.  The fact she can fake it so well makes me worried about what's behind the mask.

3 Responses to “How my daughter with autism was different”

  1. VS_ozgirl Says:

    What an incredibly hard and sad thing to see your child going through.. definitely great that she lights up at the thought of time with her friends.. hopefully you can bring her out of her shell a bit more.. good luck {{hugs}}

  2. LivingAlmostLarge Says:

    Thank you! It is. It's a very interesting journey and process.

  3. LuckyRobin Says:

    My daughter taught herself how to make eye contact. She still hates doing it, and I've told her she doesn't have to, but its habit now. She says she learned to mimic a lot of normal behavior in the years she wasn't homeschooled, so that the teachers wouldn't pick on her. Girls go along to get along. I wouldn't be surprised if your daughter has learned a lot of mimicking behavior.

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